Winning the Battle with Chiari Malformation
Some months ago, Amanda Roussin pulled at my heart strings when she posted a video to her Facebook page regarding the progress on her journey through Chiari Malformation Type 1. For those of you who don’t know, Chiari Malformation is “when the brain is too large for the skull due to a malformation that is believed, by physicians, to happen in the mother’s womb. The cerebellum of the brain herniates outside the base of the skull into the spinal column, causing debilitating symptoms to the spinal cord.”
Roussin, diagnosed on September of 2018, says she initially went to her primary care physician after noticing symptoms of dizziness, pins and needles in her limbs, tremors in her hands, and exhaustion. After several MRIs on the brain, neurologists discovered that CM Type 1 was the cause. “I have a 7mm herniation that has resulted in two brain surgeries. The first surgery was called a decompression surgery. The doctor removed the back of the skull to relieve pressure. The second was because I needed an emergency wound clean-out from an infection after my initial surgery,” Amanda says.
For her, symptoms can be draining. Amanda expressed that it has become a struggle just to get out of bed. “I’m so shaky, tingly, nauseous. Chiara head pain feels like a migraine x100 in the back of my head. My left side is weaker than my right, so a lot of times when I do get out of bed and attempt to walk it is hard for me to put pressure on my left leg. I feel completely unstable.”
Regular tasks like showering or getting dressed have become difficult to bear. “But I’m a fighter. I push through for my family.”
In the beginning, Roussin tried to hold off on having to have any type of surgery for her malformation. But after losing feeling in her legs shortly after diagnosis, they ended up doing the surgery sooner than expected.
She remembers the state of shock she was in when doctors told her of her condition. “It didn’t make sense,” she says. “I ate healthy and worked out daily.” But unfortunately, despite making sense of it, the reality of her situation was still the same.
Amanda says she had to re-learn to walk, talk, and eat post-op. For the first six months after surgery, she could not do much more than the minimum due to weakness. Though around month seven she began to feel like herself again, she is now one-year post-op and says symptoms are coming back.
In fact, Amanda just found out that she now has Hydrocephalus and may have to have a shunt put in around the brain where fluid is building.
But Roussin is not just a woman with Chiaria Malformation Type 1. She is a mother of four boys, a wife, and a self-taught make-up artist. Born and raised in Vermont, Roussin now lives in Florida with her husband and four children. “We are like most traditional families,” Amanda told me. “It has been difficult since my surgeries, but I still do what I have to do to make sure my family is taken care of.”
In learning that common symptoms of Chiari Malformation are tremors of the hands, and pins and needles of the limbs, I was fascinated when I discovered that Amanda’s passion is in the art of make-up. How could someone with little control of mobility manage to establish a level of artistry that she has developed? How does she have the motivation to continue on in that field despite the odds being against her?
When trying to keep positive, Amanda says, “I put some make-up on and it makes me feel better.” Even if she is in bed most of the day, getting up and getting ready makes her feel good about herself, even on her bad days. After losing all of her hair due to the disease, applying make-up became a way to gain some of her confidence back. “It was a way to enhance my natural beauty.” That’s when she says she really knew she fell in love with make-up. “Not only was it helping me physically, but emotionally as well.”
Though she has always loved make-up, she says she’s been taking the craft seriously for just two years. This means most of her self-training has been after diagnosis. “I don’t let Chiari Malformation define me and stop me when it comes to things I love doing for my family and myself.” Roussin believes that, if anything, this disease has taught her to try harder and be better in her creativity.
Amanda believes everyone in the make-up community has their own unique ability that they bring to the table, and has no desire to be the best at make-up. What she does want, however, is to share her story in hopes of giving people “the drive to keep moving forward and follow their dreams.”
It is her goal to show Chiari Malformation who is boss by eventually obtaining her certifications in make-up so that she may gain a local clientele. She plans to use her social media to hopefully relate to others like her. “Maybe they won’t relate to my disease specifically, but they could be going through their own life struggles and find light within me.”
It is clear from Amanda’s work in the make-up community, and through the eyes of her thriving boys, that she is not allowing this condition to get the best of her. She loves baking, going to the beach, and spending quality time with her family as well, and Chiari Malformation is not something she allows to get the best of her in those moments. “I want my boys to be proud of their momma,” she says. “I want people to know I am someone who never gave up.”
Roussin says the biggest advice she could give to those who have this passion is to remain consistent. Consistency is obtained by pushing through the negative moments in hopes of more positive ones. And that’s what she’s doing every day.
“You can either give up and have a negative outlook on your life, and the disease, or you can use the disease as fuel to light a fire,” Amanda expresses regarding those like her. “There are many online websites as well as social media support groups that will provide you with the education you need.” She wants people with CM to educate themselves before making decisions about treatment.
“Keep pushing, and never let anything stop you!”